Quote:
Originally Posted by sassy
I am an IRL (took me several tries to figure out what that meant LOL) MS SHG leader. (In Real Life Multiple Sclerosis Self-Help Group leader) and I pray I never talk with a person considering going to a MS SHG like that leader did.
I have gone through some extensive training with the NMSS and when I can no longer follow their guidelines I will step down.
But I will never sugar coat MS for anyone. It is what it is. There is hope for everyone and that is what I concentrate on when I talk with a new caller and/or someone who has been in our group. We vary from the very able to the very disabled both in cognitive and physical sense.
If that SHG doesn't seem a good fit for you call the NMSS 1-800-FIGHT-MS and see if there are any other groups in your area. Also, if that leader is affiliated with the NMSS then please share your concerns with your local chapter.
I'm sure you know as a SHG leader yourself you will never be able to meet everyone's needs all the time.
Good luck, let me know if I can help you find a local group for you.
|
Sassy makes some very good points!
I have been to some SHG in my area and am very involved with the NMSS organization here. There are several groups that meet in my area and I occasionally attend a meeting here and there.
I tend to focus on the positive rather than the negative as I have learned that this disease is different for everyone (all 7+ that I have had this disease!)
I also have many real life friends with this disease and each and every one of them are different.
When first dx'd, you have to sift through the minutiae and find what fits for you. Trying to absorb everything WILL scare the carp out of you. That's why a lot of docs say to the newly dx'd stay away from the internet and stay away from SHG. Figure out what's best for you, get comfortable with yourself and this disease before you see how it affects others.
I think at some point we have all been where you are so don't feel alone. SHGs do fit for some people, but not all. They do serve a purpose.
Maybe by going, you can help someone else. We are not all in wc, and we will not all end up in wc. Some people may have one relapse and never have one again. Others are not so lucky. It's an unknown disease course for everyone.
So sit back, relax, and enjoy the ride. You never know what the day will bring!